HCV Quest Global Patient Survey

HCV Quest is a global patient survey, investigating the impacts hepatitis C can have on patients’ personal and social life as well as education and work and examining patients’ experience of care.  Through HCV Quest, we have gathered data which will become a powerful tool for patient advocacy and will be used by WHA to challenge governments and health policy makers to do more to fight viral hepatitis.

Almost all the information and data available about hepatitis C has come exclusively from clinicians, from epidemiologists and from the pharmaceutical industry. So little information has come from the people living with, and too often dying from, this virus. To address this unacceptable imbalance and ensure the patient voice is truly heard, we created the HCV Quest Global Patient Survey. We surveyed almost 4,000 people from 73 countries on how living with hepatitis C impacts all aspects of their lifestyle, how much they knew before they were diagnosed and their experience of diagnosis, care and treatment.

There was a truly global response. Although there are of course variations from country to country, the key messages are remarkably consistent. At a time when the world is beginning to wake up to the severity of the situation and governments are starting to consider how to address hepatitis C, there is a clear imperative for them to take note of these messages and act accordingly.

What HCV Quest clearly reveals is that not enough is being done by governments to raise awareness, that physicians persistently miss opportunities to diagnose people, that living with hepatitis C and undergoing interferon-based treatment has a greater than appreciated impact on a person’s physical, psychological and emotional health, that the impact is too often unappreciated by healthcare professionals in particular and that in general not enough is being done to inform and support patients across the world. Most concerning of all, healthcare professionals are not referring patients to groups that exist to address these very issues. How on earth are we going to prevent new infections, encourage people to get tested and assist people through treatment if adequate information and support is not accessible to those who need it most?

HCV Quest, because it is global and because of the number of respondents, is sending some very clear messages to governments everywhere about the many wasted opportunities – to use World Hepatitis Day to inform those at risk, to diagnose people much earlier because so often they do present with some symptoms and to make better use of patient groups to take some of the burden from the health system. Finally it is telling them that they must do more to ensure that people with hepatitis C have access to interferon-free treatment. They must in fact give them back their lives.

Read the HCV Quest Key Findings report here.

Download the raw survey data here.

HCV Quest Toolkit:

To ensure the survey data can be leveraged on a local level, we have developed the HCV Quest Toolkit: an online hub with all the documents you need to develop and use survey findings in advocacy activities. The hub includes:

User guide: The user guide highlights key aspects of the HCV Quest data and shows how it can be used with different stakeholders. The guide includes key messages, tips on how to engage media and how to carry out surveys.

Advocacy Tools: These are global tools that support the utilisation of HCV Quest findings and include fact sheets, a template letter to policy makers, standby Q&As and an external presentation.

Communications Tools: The communications tools assist you with media outreach and include a template press release, example Twitter and Facebook posts, social media graphics and an infographic.

Visit the HCV Quest Toolkit here.

Country reports:

Country specific reports were created for countries with more than 100 responses. These reports provide insights into the experiences shared by patients in these countries and highlight pertinent findings in comparison with regional results. Each report is available in the language of that country. Click the links below to download the reports.

United Kingdom (EN)